đ€ November 21, 2025 / Continued:
That day, I attended a meeting day dedicated to rare diseases. It took place in a beautiful hotel in Paris. When we arrived, we were given the symbolic ribbon representing this cause.
Then, several conferences were held in a main room, mostly focused on the journey of living with a rare disease, the long and difficult diagnostic odyssey, and the transition from pediatric care to adult healthcare without proper support (I experienced this myself, and it was a very harsh experienceâŠ).
There were many personal testimonies, and so many common points kept coming up⊠It reminded me how much I am not alone in this fight, and that I was never the problem. The system simply failed to handle it and minimized everything, to the point where it almost cost me my life multiple timesâŠ
Overall, it was a very meaningful and insightful day. At one point, we were each asked to introduce ourselves. I took the opportunity to speak and present myself, representing the gastroparesis association I am part of.
I also met an adorable follower and her mom, who told me how much my videos had helped their family, and they thanked me for everything I do. It truly touches me to hear things like that, and itâs also what gives me the strength to keep going. Thank you so much again for your support!
I spent quite a bit of time with this follower, who was very emotional to meet me. She shared a lot about the impact of my videos, especially regarding one of her grandparents who passed away, to whom she had also shown my contentâŠ
At the end of the day, we all took a group photo (itâs on Instagram), and there was also food and drinks available.
And of course, my brother was with me as usual đ
